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Person-al Journeys: Reflections on Personhood and Dementia Based on Ethnographic Research and Family Experience

2007; Taylor & Francis; Volume: 7; Issue: 6 Linguagem: Inglês

10.1080/15265160701347536

1536-0075

Catherine Myser,

Race, Genetics, and Society

Click to increase image sizeClick to decrease image size Acknowledgement: This short piece is dedicated to my father as he was then (in the time of tall tales and hijinks); as he is now (in the time of fading photos); and as he will be in future, as long as we have the (sometimes extraordinarily challenging) pleasure of his company. Notes 1. My father's adult-onset hydrocephalus was originally due to an obstructed aqueduct of Sylvius diagnosed at age 39 to 40 years. The pressure in his ventricles risking injury to his brain was relieved by a cerebral spinal fluid shunt. Over the following 32 years, he has had five shunt revisions; the most recent surgery was performed in September 2006. 2. My ethnographic research involved one academic year in all regional neonatal, maternal-fetal, and genetics units in Sweden (funded by a Fulbright Scholarship); two months at the All India Institute of Medical Sciences (New Delhi, India; funded by a Georgetown University Dissertation Research Travel Grant); and 18 months in various academic medical centers in multiple regions of the United States. I conducted in-depth, structured, and open-ended interviews of 250 healthcare professionals; conducted participant observation in clinics and patient-care meetings; and triangulated resulting data with relevant bioethics, social science, health professional, governmental and policy publications to study and elaborate the ethical concepts of “personhood,” “quality of life,” and “best interests” as conceived and employed by health professionals and parents/family members in selective nontreatment and termination decisions, compared across differing sociocultural contexts. 3. This application of the concept of speciesism by health professionals is in direct opposition with that of animal rights philosopher Peter Singer, who overtly seeks to contest speciesism by arguing that healthy animals are more deserving of personhood status than severely handicapped human infants. Applications of speciesism may thus depend on one's preexisting or learned commitments and sensibilities. (Human) health professionals contrasted their own expertise and duties to care for humans with the expertise and duties of veterinarians to value and treat animals. 4. Similar factors may also operate in philosophers' and ethicists' theories of personhood that hyper-value rationality. 5. In all three countries studied, abortion laws also grounded such thinking, even in countries where legal definitions distinguishing persons, nonpersons and potential persons for legal purposes conflicted with clinical assessments. 6. See, as a powerful example, the data outlined in my chapter on India (CitationMyser 1994, 183–214).